Where does guilt and shame stem from? Is this something we learn in our childhood? I had a great childhood despite dealing with doctor visits and many days spent in bed watching cartoons trying to recover from whatever illness I had going on. As a child, a sick day included staying in my parents’ bed and having matzo ball soup brought to me. My mom would find some historical mini-series for us to watch and there was plenty of cuddle time. I did not feel guilt over having to spend one extra day at home or missing school. I did not feel shame when I had the stomach flu and accidentally missed the garbage can. I was just a kid who was sick. I never worried about school or having to make up work. I could cry or complain, and know that within a few days I would be on the mend.
Since that time things shifted for me. I’m not certain if it was that scoff one particular doctor gave after their initial diagnosis was wrong. It could have been when I continued to get clots despite everyone’s best efforts to get me on a treatment plan that would work. As I aged, the guilt and shame began to seep in like an intruder that I had no armor against. Something definitely changed and it’s been more than just my perception alone.
I have tried to recreate those days of my youth. To say I love TV is an understatement, which is precisely why my writing partner, Sydney, and I focus on writing TV pilots. When I have sick days, which have recently been spent in the hospital instead of my own comfortable bed, I can FaceTime Sydney to discuss whatever TV show we mutually decided to binge on. Even though we’re states away, it gives me something to look forward to. Travis, one of my NYLI friends I still keep in contact with, will chat with me on the phone. Sometimes these calls last well into the night because I can’t sleep, and he’s just that amazing of a friend to stay up talking with me. Both Travis and Sydney work their hardest from a distance to try to ease the lonely feelings that I get in the hospital and replace that with laughter and friendship..
Where does the guilt come in? Sometimes it happens when one of my parents spends the night because I had an extra rough day in the hospital. I know that they are aging and those hospital chairs are in no way conducive to sleep. I don’t want them to be in pain or develop health issues as a side effect of caring for me.
Sometimes the guilt comes in when I’m in a lot of pain. There is no magic trick for any injury or illness to make it manageable. One combination of medication could work perfectly at one time, and with the next illness it may barely make a dent.
I had a severe allergic reaction from mold exposure when I was in California. I was hospitalized once I returned home, looked like a pumpkin face—except I was red rather than orange—and my asthma flared. The coughing led my muscles to spasm and cramp. It’s been extremely painful. I’ve had to make a lot of last-minute doctor appointments because of muscles that refuse to cooperate. I had to go to the emergency room. Then my neurologist expedited an appointment so I could get Botox to help loosen my muscles. While I was grateful to get in soon, I felt guilty because he didn’t have clinic time that week. He came in for an appointment to help me out.
My arm muscles have been shaky from the muscle spasms. Two days later while walking down the stairs, my foot caught the edge of the carpet and I fell—hard. A stair edge dug right into my back. It was the scariest fall I’ve had since I’ve been on blood thinners, and had to go get evaluated for a bleed. Thank goodness there wasn’t one. The pain was so extreme that I couldn’t sit up. While at the ER I felt shame. How could I have been so clumsy? Once I was given enough pain medications to sit up, it still wasn’t enough to where I could walk without looking like some stiff-hipped zombie. I felt shame that I needed so much medication to barely be able to function. Providers suggested that I be admitted, but hospital days are not like childhood sick days and I wanted to go home.
I felt guilty because I probably made the wrong decision. The weekend went by and the medication did not help. I woke up many times throughout the night barely holding back screams. I tried to distract myself with books and TV. My dad even got me matzo ball soup from a nearby deli. I was not OK though, and I returned to the hospital because the pain made me physically ill. I felt guilty to be back at the ER. I felt ashamed that I couldn’t manage like I thought I could.
As I learn to work with these feelings, I’ve video blogged on and off. I’ve often found that connecting with others online is a great way to release frustration. Even though I have no clue who is viewing them on the other end, I don’t have to pretend that I’m brave all the time. I don’t have to feign that I’m doing alright. Sometimes I’m not doing alright. Sometimes I just want a hug and the ability to bring back those “little kid sick days.” I’m not letting anyone down by overestimating my ability to manage my back pain. The only person hurting from it is me.
At the end of the day, I’m just an adult trying to make abnormal situations into a sort of normal that I can feel comfortable with. No one would see a little kid as being weak or a disappointment in struggling with their illness. The shame and guilt are things we place on ourselves no matter what the initial scenarios that triggered them. I know I’m not alone in feeling this. It’s up to each individual to remove those layers of shame and guilt. I’ve had those momentary glimpses of light when I’ve done just that, removed those layers, and seen how unbelievably lighter things can feel. It’s not unattainable, it’s letting yourself off the hook every once in a while. Not every health flare is preventable. Not every medication will work. If you’re doing your best, try to remove those layers of shame and guilt—watch a good movie or maybe even find a coloring book.